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Is timing between diagnosis and hysterectomy critical?
Gynecologic Cancers | Last Active: 4 days ago | Replies (9)Comment receiving replies
@val64 @jneil @naturegirl5
The waiting is SO hard, and there are so many ups and down. For me, that is the hardest part. I had some post-menopausal bleeding, starting in August. An ultrasound diagnosed was endometrial hyperplasia/endometrial carcinoma. I was terrified. I saw a gynecologist, who disagreed with the diagnosis because none of the traditional criteria fit me (polycystic ovary syndrome, infertility, obesity, etc.). He was convinced it was a polyp. I had a D&C and hysteroscopy in December, and even after the surgery, he was convinced it was a polyp or fibroid that he sampled. A week later, I was diagnosed with grade 3 endometrial adenocarcinoma. Within 2 weeks I had an appointment with a specialist, and within 2 weeks of that a total hysterectomy with fallopian tubes and ovaries removed, as well as lymph node sampling. My 6 week follow is next week, and I am so unsettled about the results. I have seen the results ahead of time, and there are good parts and not as good parts (only 11% spread into myometrial wall, clean margins, not in lymph nodes, but substantial lymphovascular invasion). DNA testing came back showing 3 mutations, including one POLE, with a high tumor mutation burden. I shouldn't be trying to figure this out myself, but 6 weeks is so long to wait and worry. I am so stressed about what follow-up treatment will be, if anything, because I keep reading contradictory things. I can't wait to just to know once and for all. And to stop waiting. But I will also say that before the grade 3 diagnosis, I was told that grade 1 is VERY treatable and so slow moving that a little bit of a wait time will not impact it all. It is almost always curable!
Replies to "@val64 @jneil @naturegirl5 The waiting is SO hard, and there are so many ups and down...."
@dlgbb @val64. Wow, our stories are so similar to one another. My gynecologist who I originally consulted when I had post-menopausal spotting also did not think I had the risk factors for endometrial cancer. I had an ultrasound that indicated “suspicious for endometrial carcinoma” and then a D&C and hysteroscopy was scheduled by the gynecologist. My gynecologist said he was stunned by my diagnosis of endometroid adenocarcinoma FIGO Grade 1. Wrong. I did have some of the risk factors but I guess I was too think, also. Fortunately, once the diagnosis was made I got into Mayo Clinic quickly and the gyn-oncologist I saw scheduled me for a hysterectomy within a week. So, from diagnosis to hysterectomy was just two weeks. I agree with you, @dlgbb. Your wait is too long. Will you call the office and see if you can get in sooner?
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Incredibly frustrating. I had some of the same experiences with a gyn-oncologist, who really should have known better.
(The ultrasound report said "suspicious for endometrial carcinoma", which is the strongest statement a radiologist is ever going to make. The gyn-oncologist then said he didn't think I had cancer, and that if I did it wasn't a big deal--WRONG, and an incredibly stupid thing to say. He also made a comment about my build (thin). After his attempt at a biopsy failed, it took him a month to schedule a D&C, and I don't know whether this was in part because he didn't think I was fat enough to have endometrial cancer. I could complain endlessly about this guy, but will stop there. )
Obviously, for you, it took them way too long to get from the ultrasound to the hysterectomy, but I think you should still be very hopeful. Women with POLE mutant cancers really do have an excellent prognosis, and did even before immunotherapy. So the odds are good that things will go well no matter what follow-up they/you decide on. But having things unsettled is definitely stressful. I hope you'll share with us what the decision is. Canada/Alberta seems to be ahead of the US regarding POLE.